December 30, 2008

Don't let the door hit ya on the way out!

While 2008 wasn't the WORST year I've ever had personally, it certainly was a crummy one for just about the entire world.  Holy cow, what has happened to the global economy?

I am ready to see this year go.  In fact, I'll hold the door open and kick it in the ass to get it moving quicker.

Here's a toast to 2009!  

December 19, 2008

Hey there moley girl

This can also be called Fingolimod Trial Screening Day, Part Two.  This time I visited the study Dermatologist to get a body check.  Apparently a potential side effect of this study drug is melanomas, so they want to A) make sure you don't have any prior to entering the study, and B) make a record of every mole you have on your body so if any of them changes there will be a Before and After photo array.

Yep, that's right.  The derm took pictures.  Of each and every "beauty mark" on my body.  Even the ones in places that have NEVER been exposed to the sun.  And this was after she measured them.  I think there were 27, not including the four she went ahead and removed. They've been sent out to whatever lab it is that'll determine whether or not they are anything to worry about.

They'll call me if there's anything to worry about, otherwise I won't hear a thing.  This is definitely a case of no news is good news, if you ask me!  Seeing as how the next two weeks are Christmas then New Year's, I think if I don't hear anything during the week of January 5 - 9, I should be good to go!

December 15, 2008

Out of the Holding Pattern?

 I had my screening for the Fingolimod research study yesterday. It was a long and busy day:

I got lost going downtown and was 30 minutes late!  Rather than arriving at 7:00am, I walked in at 7:30 but nobody seemed to care.  

First I met with the research doctor who did a cursory examination and was ready to answer any question I had.  Because of my almost constant investigation and reading of histories, press releases and blogs, the newest announcement late last week resulted in only one new question.  Thank god, because I was kinds of scared of saying, "Nope, I know everything I need to know."  I thought he'd look at me like I was insane or something.

Anyhoo, two deaths were mentioned in the release, attributed to "fatal herpes infections." I spent all weekend trying to figure out how a herpes can become fatal.  The doc explained that the deaths were caused by encephalitis - or was it meningitis, shit, I've already forgotten.  Anyway, they both occurred in India, and and he told me how to recognize it.  We had maybe a five-minute conversation about it and my fear was alleviated.

Okay, so far, so good.  At that point I was turned over to a Nurse who went over the schedule for the day and walked me to the first appointment.  The sequence of events went like this:

1.  MRI with and without contrast.  My rotten veins did not want to accept the contrast agent and the nurse had to stick me in four different places.  When she finally got a good vein she took the opportunity to draw all the blood they were going to need. Keep in mind, I was still on the MRI table with my head in the cage and the mask over my eyes so I couldn't actually see any of this (which was probably a good thing).

2.  Walk next door to the CT scan of my lungs.

3.  Peed in a cup.

4.  EKG and attachment of a Holter Monitor.

5.  Expanded Disability Status Scale (EDSS) test.

6.  The Multiple Sclerosis Functional Composite (MSFC) test.

7.  Low Contrast Letter Acuity Eye Exam

8.  Paced Auditory Serial Addition Test 

9.  Now it was examination time by the 'blind' doctor, who is not involved in the study, doesn't want to hear about it or my history, which was kind of interesting.  All he is supposed to do is evaluate me at that moment. It was a very thorough exam and when he was done he THANKED me for my participation and said it was people like me who allow advances in medicine to even occur.  Wow, huh?  That was such a nice thing to say, I think I might have blushed.

Repeat of #5 - 8.  

Then it was back to the car for the drive to a nearby hospital for the Pulmonary Function Test.

By now it is around 1:45pm and the next and final appointment for the day was in another building on the hospital campus in 45 minutes.  I stopped by the nearest cafeteria and inhaled a healthy-sized piece of quiche.  I think it was good.  I was so hungry and woofed it down so fast, I really don't think I tasted it.

Finally, the Ophthalmologist for an Optical Coherence Tomography exam.  According to a neurology web page, "This test is used to produce detailed images of the retina. It is much like ultrasound, except that it uses light beams instead of sound waves. Optical coherence tomography helps physicians evaluate problems with the retina such as swelling and holes, as well as abnormalities of the optic nerve. It can be useful in diagnosing and monitoring glaucoma.

During the exam, focused beams of light are directed into the eye. The light beams scan the structural features of the retina, producing a cross-section image similar to a topographical map. The test takes about 10 to 20 minutes and usually requires dilation of the pupils." (Author: Dale K. Heuer, MD; September 14, 2004)

I got home about 5:00pm, and managed to keep my eyes open until about 7:00pm.  At that point I zonked out and slept like a dead person until sometime after 1:00am. I'll take a nap early this afternoon and will hopefully get back to a regular sleep schedule tonight!

December 09, 2008

Pilates? What Am I, Nuts?

First off, I can't believe I haven't written anything in nearly ten days.  Just because I know my life is a snoozefest doesn't mean everyone else needs to know it too!

When this most recent flare-up started, I ceased doing any really challenging exercise, mostly because I was afraid I'd topple over. Since I have been feeling better and better, especially over the last couple of weeks, I decided it was time to return to Pilates class.

Ten in the morning on Mondays and Wednesdays.  I love it and always feel wonderful afterward.
Yesterday I went to class, not intending to try and exercise to the level I had been when I left.  I was pretty embarassed when class was over; I had not been able to get past 5 or so reps of anything.  But, at least I made it through the entire 55 minute class and I felt great all afternoon.

This morning I woke up and headed toward the kitchen for my cuppa coffee. Somehow, when I was asleep,  the placement and dimensions of my house had been altered.  Door frames were six inches off, the hallway was narrower, and the edges of every carpet had been bent upward.  How else can I explain the listing, tripping and bruises I received getting from my bed into the kitchen, other than little, gnome-like, nocturnal, sadistic carpenters? 

That's my story, and I'm sticking to it.

December 03, 2008

Market Survey

I'm in the database of an international research and data collection firm that has a local office.  Every few weeks they send out emails looking for people to participate in one study or another; could be medical or habits or entertainment or home stuff.  Anyway, I always try to participate in the multiple sclerosis-related things because those are usually paid (and who doesn't like a few bucks every now and then).

This particular study was participation in a small group to answer questions about what living with MS is like.  The obvious answer is, "It sucks, thank you for asking.  Can I have my check now?"

Of course it was not that easy.  And of course I didn't write down every question asked, but I met three very, very nice people.  There were four of us on this panel with a moderator who interviewed us.  Three women and one guy; I guess two in our 30's, one in her 40's (that'd be me) and one in her 50's.  We got to talk about ourselves for nearly 90 minutes.  What fun!

All we were told about the study was that a pharmaceutical company was researching the development of a new treatment for MS. I'll never know who, but it is nice to know that drug companies are still even interested! 

By the way, I walked out of there with a check for $125 in my purse.  Sweet!

December 01, 2008

The Flu Shot

I bet it's been 10 years or so since I last had a flu shot.  I remember they were being offered at no charge where I worked and I my boss was in line with me.  I also remember getting a little snarky a few days afterward, but it wasn't too bad.  However, about four to six weeks later I came down with a flu that knocked me flat for over a week.  Haven't done it since.  Until last Wednesday, when one of the research nurses, responding to an email from me, said they really wanted me to have one.  So I made the appointment and got it done this afternoon.  I'm anticipating nothing happening.  Here's why:

The MS medication I've been shooting up with since August of 1998 is an interferon.  The primary side effects of interferons are "flu-like" things such as fever, muscle aches, chills, blah, blah, blah.  I learned tricks to minimize the effects, like popping Tylenol or Motrin prior to the injection, or doing the shot at night in  an attempt to sleep through the worst of it.  I've even gone so far as to get shitfaced drunk so I could pass out!  Well, okay, I only did that once and the hangover was NOT worth it.

My point here is, I've been experiencing - or skating around - a remarkable facsimile of the flu, for approximately the last 540 weeks.  The vaccine ought to be a cakewalk.  

November 30, 2008

How I Spent My Thanksgiving Vacation

1.  Did not surf the web.
2.  Did not imbibe heavily in holiday-themed cocktails.
3.  Kicked major butt at Wii Bowling.
4.  Discovered pumpkin cookies with chocolate chips.
5.  Prepared (and ate) brussels sprouts.
6.  Bought a new fridge on Black Friday.
7.  Organized three kitchen cabinets.
8.  Ordered three of the last four gifts I need for Christmas.

November 24, 2008

Where Does The Time Go?

I can't believe Thanksgiving is in three days!  I personally don't ever host a Turkey Day meal - if I don't beg an invite to somebody's house then I buy a prepared meal from the local Publix supermarket.  Preheat the oven, take the lid off the container, and cook.  That's about it for me.  Lazy?  No.  I'd rather think I utilize my limited energy wisely.  :)

November 19, 2008

Fingolimod Study News

I found this on another web site, but it doesn't have it's source identified, so I've edited the snot out of it, removing any mention of Laquinimod and emphasizing Fingolimod, which is the drug I hope to be trialing.  I hope I'm not stepping on any copyrights here, but the early data on Fingolimod is exciting. 

Oral Immunomodulators Laquinimod and Fingolimod Produce Persistent Benefits in RRMS

Oral agents promise to both increase efficacy and decrease the burden of injections in patients with MS, thus allowing earlier treatment and better long-term compliance. Although no oral agents are currently approved by the US Food and Drug Administration for use in MS, several recent studies have documented clinical and magnetic resonance imaging (MRI) activity of oral immunomodulators in RRMS. Noteworthy results presented at WCTRIMS from separate study extensions of laquinimod and fingolimod phase 2 placebo-controlled trials showed sustained benefits with these oral agents.

Persistent inhibition of clinical and MRI activity was also reported in a similarly   designed 3-year extension study of oral fingolimod (FTY720) in patients with RRMS.[3] At the end of the 6-month placebo-controlled phase, the original fingolimod dose (1.25 or 5.0 mg/day) was either continued or placebo-treated patients were re-randomized to active treatment for 36 months. During months 15 through 24 of the extension phase, patients receiving fingolimod once daily at 5.0 mg were switched to 1.25 mg. After 36 months of continuous fingolimod treatment, the annual relapse rate remained low (0.20-0.21) and 68% to 73% of patients remained relapse-free. At month 36, the majority of patients switched to or maintained on fingolimod were free from Gd-enhancing lesions (88%-89%) or new T2 lesions (70%-78%). The majority (76%-80%) of patients continuing in the extension were also free from 6-month sustained disability progression. Frequently reported adverse events associated with fingolimod during the placebo-controlled phase included dyspnea, diarrhea, and nausea; these were rarely reported during months 24 through 36 and the discontinuation rate (8.0%) was also halved compared with months 12 through 24.

Collectively, the results from these extension studies indicate sustained clinical and MRI benefit with extended laquinimod or fingolimod therapy in patients with RRMS, with good tolerability, especially at lower doses.

November 17, 2008

Mourning is Over

I spent the morning trying to determine what I was going to do about my deceased former iPod.  I could take it to the Apple Store and see what they recommended, but that's not smart.  Every time I enter that store I use more and more willpower not to buy an iPhone, which could act as my phone and iPod in one place.  But I need an iPhone like I need a hole in my head.  The phone I have now, a Samsung Blackjack, works just fine, thank you.

1. The Blackjack can't synch up with my MacBook.  So, I have to enter every calendar item twice if I want it to be mobile.
2. The iPhone would probably end up costing me $600 with a bluetooth headset, car charger, the monthly plan fee and the fact AT&T will not subsidize me (the rotten scumbags).
3. The iPod Touch can synch with my MacBook and hold my music, contacts and calendar.

So . . . drumroll please . . . meet the newest techie toy in my arsenal.  Looks like an iPhone but it's not! This is what $229 bought me.  The 8GB iPod touch.  Very handsome, isn't he?

R.I.P. To A Beloved iPod

I've had a 6GB iPod Mini for about five years now.  A couple of days ago I traveled up to the North Georgia mountains and wanted to bring my little green buddy because there was no cable, internet or wireless where we were staying.  So I plugged in the car charger and headed out.  

After a less than two-hour drive, we were getting all set up and my iPod was dead!  That was a bit disturbing because the indicator light on the car charger appeared to be working just fine.  Well, not having my tunes was not the end of the world; we had plenty of CD's and a portable CD player to entertain us.

Upon my return home I connected the iPod into my laptop.  Nothing.  My desktop.  Zip.  The Bose SoundDock. Nada.  It was dead.

Thank heaven my music is in the iTunes file on my desktop, so I haven't lost anything except the portability and overall cuteness of this shiny, bright green little bundle of fun.  On the upside, I think I paid $250 for it five years ago and a new iPod Touch is going to give me 8GB for $229. 

Wait . . . did I just say that spending $229 two weeks before Thanksgiving was the UPSIDE?  Geez...

November 11, 2008

I Need A Nap

This happens every year.  Autumn comes, the weather gets colder and the sun goes down earlier.  All those things can be dealt with, no problem.  But then . . . literally overnight . . . the end of Daylight Savings Time.  Why is it that we only set our clocks back one hour but the sun seems to be setting three hours earlier?

My brain and my body struggle to make this adjustment for at least two weeks.  It's now pitch black before 6pm and it's all I can do to keep my eyes open.  And the really sad part is, I can literally crawl into bed shortly after 6:00 and sleep through the night, and STILL not want to get out of bed before 9:00 the next morning!  

Thanks for listening, going to lay (lie?) down now... 

November 05, 2008

So Much for Having Any Control

So I get an email describing what I should expect prior to actually getting any drug.  There are tests, tests and more tests for a week in December.

The first - and longest - day of testing begins at 7:30a.m. on Monday, December 15th.  Monday mornings suck.  Monday morning during rush hour are nightmarish.  Monday morning rush hour in Atlanta is unspeakable.

Anyway, I meet with the study docs, give some blood for lab work, get an EKG, learn how to perform the cognitive tests required by the study and get fitted with a Holter monitor.  The Holter is basically a portable EKG that will track my heart rate for the next 24 hours.  At some point I will be sent to a nearby hospital where I'll submit to a Pulmonary Function Test and an eye exam.  

Trying to determine when I get to eat...

November 04, 2008

A Witness to History?

Let me be honest.  I voted for Obama.  Like many, I stewed over it for many months.  While I am a registered Democrat, I will jump the fence periodically when it comes down to actually voting.  Looking back though, I've never jumped the fence when it comes to voting for the President. 

Anyway, it's ten o'clock on Election Night and already the highly overpaid political pundits are giving Barack Obama over 200 electoral college votes.  Cool by me, but I've got a question.  Why does the electoral college still exist?  We have computers that can add and send total votes to Oz (or the White House or the Galactic Republic or wherever the official votes are stored), without the help of a middleman.  This is the Third Millennium, people!

October 30, 2008

Into the Cage I Go

No, my name is not really Grace.  See, I am one of the klutziest people you will ever meet.  Now there are the klutzes who trip a lot, then there's me.  When I lose my footing, I will generally perform what I can only describe as Olympic-standard tumbling.  After I complete a fancy, complicated routine, after determining I haven't broken any bones and am not bleeding profusely, I will hop up, curtsy and announce, "Just Call Me Grace!"

I like reading blogs and am constantly amazed at how witty, moving and clever people are.  I always considered myself to be about as creative as a coat hanger - still do, really.  But I am getting ready to start something I think is pretty big.  In January I enter a drug study for an oral therapy to treat Multiple Sclerosis.

Having been diagnosed since 1998, I am painfully familiar with the ins and outs of this nasty thing.  The only treatments available right now involve needles.  Weekly injections, every other day injections, daily injections or monthly infusions.  I can't think of anyone other than an insulin-dependent diabetic who can relate to the sheer BOREDOM of self-injecting.  It just gets old, it really does.

A pill to treat MS has been a fantasy of mine - and so many others - for a long time.  So, I whole-heartedly agreed to join the ranks of other lab rats.  This is my journal of the events. Please come with me on this journey.